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Havasupai blood samples misused

FLAGSTAFF, Ariz. - Fifty-two members of the Havasupai Tribe have filed a $25 million lawsuit against Arizona State University, alleging that blood samples collected in the early 1990s from tribal members were used for far more than just the agreed-upon diabetes research.

The civil suit, which was filed Feb. 26 in Coconino County Superior Court in Flagstaff, accuses ASU researchers of fraud and civil-rights violations after taking almost 400 blood samples. The Arizona Board of Regents was also listed as s defendant in the lawsuit.

The blood samples were used by universities and laboratories throughout the country to study such subjects as schizophrenia, inbreeding and theories about migration from Asia to North America, according to the suit.

Neither Havasupai Chair-woman Linda Mahone nor Paul Ward, an ASU attorney, would comment on the suit. Ward said the university had not been served with a copy of the lawsuit.

The suit also claims that 36 handprints taken from tribal members were used in a research project examining inbreeding and that 15 published scholarly articles examined the blood for matters other than diabetes.

According to court documents, Havasupai tribal members approached John Martin, an ASU anthropology professor, in 1990 for help in researching a diabetes epidemic on the northern Arizona reservation, located near Grand Canyon National Park.

Shortly after that, the university began the Medical Genetics Project in the village of Supai. Two other ASU researchers, geneticist Therese Markow and nutritionist Linda Vaughn, were brought in to assist Martin in his research.

The project was to have been directed toward educating tribal members about healthy eating habits and drawing the blood samples to screen for diabetes and genetic research. Those tribal members participating understood that the genetic research was directed toward diabetes and finding gene variants, much like a study that was done among the Pima populations of southern Arizona in the early 1980s.

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Havasupai tribal member Carletta Tilousi first questioned ASU in February 2003 whether the blood had been examined for other purposes. The university then commissioned a study by Phoenix attorney Stephen Hart last year. Hart concluded that beginning in 1991, only oral statements were made to donors and no consent forms were presented.

"The collection of blood samples was done without obtaining informed consent, without ASU institutional review board approval and in violation of federal and state laws and regulations," according to the suit.

Hart's report noted that some of the research resulted in dissertations about population and evolutionary genetics, not medical genetics. Another paper, published in 1997, compared the genetics of the Havasupai to other Native American tribes.

"Evidence suggests that medical records of approximately 100 Havasupai tribal members were reviewed without their knowledge or consent. Many cell lines grown from the original blood samples were accidentally destroyed and the donors were not advised of the incidents," according to Hart's report.

A doctoral candidate at ASU, Chris Armstrong, also began a study examining Havasupai genes and connections with schizophrenia but dropped it when he was unable to determine which tribal members had the mental illness.

According to the report, Armstrong said he was told by Markow to deceive and withhold information from the Havasupais about the true focus of his studies.

The tribe also is concerned with the way records were kept regarding the study and that research was begun as recently as May 2002 using the blood samples, after the project had been deemed closed.

"The investigation has revealed that ASU is now revising the IRB (internal review board) process," according to Hart's report.